After being without any fibromyalgia symptoms since late May, “The Twins”—Pain and Agony—are back with Nichelle.
She has had some minor pain this week, possibly connected to the return of cold weather, but we were hoping (and praying) that it would not be as severe as before.
Today she had severe pain in her feet, head, and arms. At one point, she wasn’t able to manipulate the wheel on her sewing machine.
Disappointing … discouraging.
See the entry named What’s Wrong with Nichelle for some background on Nichelle with the disease, and Pain for more information and discussion. (Or view all posts categorized as related to fibromyalgia.)
Oh how horrible! I personally know VERY WELL the frustration of having symptoms you hoped were gone come back again. I’m so sorry. I will be praying for you. We all love you Nichelle!
Ohhhhh, I am so sorry, Nichelle. I will uphold you in prayer!
Oh bad news! You’ll be in my thoughts and prayers. Love you!
I had some pain back in May and June. July had to be the first month that I remember not having any at all. I stopped taking my meds at the end of July and until this past week, have been totally pain free and drug free. I’m only taking my migraine preventive and not the many others that I was only several months ago.
Today, brought pain and extreme exhaustion and occasional dizziness. Your prayers are truly needed. So please keep ’em coming. Many thanks.
Day of Dissapointment
Today was an attitude adjustment day. I was working downstairs (I took the day off to do some much needed cleaning and eat up some mandatory vacation time), when I came up to get the broom and dustpan just after lunch, Nichelle had fallen asleep sitting up on the couch. I knew it was a bad sign.
The rest of the day brought Nichelle exhaustion and severe fatigue, more of “the twins,” dizziness, and significant swelling (enough so that I took a photograph for comparison); at dinner, she couldn’t cut through a piece of bread without help.
I have to confess, I was really angry for part of the day. Remembering the debilitation of her disease, part of me felt like screaming, “You gave my wife back to me! Why do that if you were only going to take her away again?”
Tonight at the missions conference, though, Nichelle and I both had tears in our eyes during the sermon. Missionary Ed Vernoy was talking about how God carries us when we cannot get through things ourselves. It’s the kind of saying that I normally would have found trite, but we really needed to be reminded of that.
I was thinking about my own thoughts, though, and thought of many cases in the Psalms where the first cry to God is one of anguish. Psalm 22, quoted by Jesus during His crucifixion, is that way: “My God, my God, why hast thou forsaken me? why art thou so far from helping me, and from the words of my roaring?” It moves on to what we would think of as a more typical prayer: “My praise shall be of thee in the great congregation.” Yet the entire Psalm is a most heartfelt prayer.
I’m grateful we have a God who hears not just our praise, but our complaints, and who strengthens those who call upon Him.
Nichelle,So sorry to hear your news..luv you and will pray for you…take care sis.
While recently doing a Bible study in Psalms with a lady going through a severe trial, she pointed out to me that David beseeched God again and again and again. He didn’t only need Him once; he was continually seeking Him as he continued on in trials. Here are the chapters she read and meditated on & found so encouraging:
1, 5, 16
19, 27
34, 40
42, 43
56, 63
71, 84
86, 91
I’d like to thank the many people who have offered encouragement and prayer. I honestly don’t know why this latest round of the fibro has hit me so hard, other than the fact that having Nichelle so healthy for so long was more than I ever dreamed possible, and it contrasts so sharply with what she is going through now. I can’t believe the severity and the rapidity of symptom onset. I have rejoiced in the triumphs of the past few months, amazed at all Nichelle has been able to accomplish, but now my heart is heavy. I cannot bear the thought of “losing her”—of her being incapacitated—again.
Naomi has been a bright spot. We were trying to find the cordless phone handset (which had been locked into “in use” mode). Naomi said, “Where’s phone? All gone. I ate it,” and opened her mouth wide to emphasize what she had said. Later she said, “Where’s phone? I swallowed it,” and we all giggled. Her laughter is contagious, and I gave her a big hug. Her sense of humor is well developed for someone who just turned 2.
Nichelle spoke with Dr. Rescigno (her amazing neurologist) this morning, and has an appointment set up for a couple of weeks from now. The return of the symptoms were not a surprise to him, as it is “the nature of the beast” in his words.
Medically, there is hope that the gamut of symptoms she now has are caused by migraine pain, which may be treatable, although the medication that appeared to help dramatically in the past so far has had no effect. I need to look into the interaction between climate and fibromyalgia. Also, since hormones produced during pregnancy and lactation eliminate the symptoms of fibromyalgia, it would be very interesting to see if there is any ongoing study or completed research about hormonal treatments. We also have noticed that her symptoms are most severe when the edema is at its worst. She has an appointment with a cardiologist to look at that in December (the appointment has been postponed twice now by the cardiologist’s office).
Still, discouragement and a great sense of loss have overwhelmed me at times. At fat club Saturday I did not speak except when forced to. I wept silently through the prayer time, and broke down sobbing on the drive home. Sunday afternoon and evening brought more of the same, including a long bit of crying as I sat alone in my pew after our music director Rick Mullett asked the congregation to pray for Nichelle. And then comes self-accusation: What right do I have to complain? Why can I not simply be grateful for the recent, wonderful months? Why am I not quickly leaning upon the comfort of God’s strength, and the knowledge that He is Sovereign, and has a purpose even for this? How is my selfish reaction helping Nichelle?
(I should add that I am not so badly off today as the past two days.)
I know I will find encouragement and strength in the Lord our God, but right now He patiently hears more complaint than praise, and more anguish than glorification.
I would like to thank everyone for your prayers and words of encouragement, too. It’s been hard facing the fibro again and this is only week two. I do praise God for the pain-free and med-free months that He gave me. God is in control of all that happens and I need to rest in that. He brought us through before and we know that He will do the same again.
Yesterday, Sunday, was difficult. I awoke feeling fine and spent the first half of the day that way. Isaac wasn’t feeling well, so I stayed home with him. I was scheduled to sing a solo in the evening service, but had to cancel because things got bad again. I too, have cried over this for the sheer fact of being unable to do things for just my family, never mind the ministries that I won’t be able to take part in. That too, hurts a great deal. So with that said, pray for us to be encouraged, for my doctor to have wisdom in what he’s prescribing and to stay focused on the One who will see us through.
What a difference a day can make! Finally, my emotions have receded enough to allow God to give me a reasonable perspective on Nichelle’s illness. He will get us through this.
Nichelle pointed out that I described feeling this way in my comments on the “What’s Wrong with Nichelle?” post. It’s a bit ironic, because I don’t consciously remember feeling down, but I seem (based on what I wrote) to have gone through the same stages, just not as intensely.
Today Nichelle is worn out. Her speech sounds slurred, the facial swelling is very significant, and she is having severe, sharp pains throughout her body.
Our prevailing theory (which covers everything but the edema) is that the intense pains prevent her from sleeping soundly, leading to the exhaustion, dizziness, and other symptoms. Maybe she has a brain cloud.
We certainly long for a cure or effective treatment, but feeling like myself again, and being given the strength to be able to comfort and help Nichelle is a big improvement.
It’s not a sin to cry or to grieve. Somehow that idea has sneaked into Christianity, but it’s not Biblical. I never trust a believer who is “forced” cheery all the time. I don’t believe it. We are to “rejoice with those who rejoice and weep with those who weep”. The joy a Christian has is that 1)God is there, even in the dark and 2)This life is short in the face of eternity. That’s how you have the joy of your relationship with God, even in the midst of trials.
If you have any physiology questions, ESPECIALLY hormonal ones, you know where to find an expert! Just email her. She’d be glad to explain physiological mechanisms (actually, MORE than glad 😉 and can answer many questions you might have. She is especially good at evaluating research. Btw, her doctoral just got posted on Amazon and Matt C. and her brother wrote hysterical reviews! I’m not sure that will help her career, but it does take a little effort to get to the reviews, so maybe serious scientists won’t see them.
My MD friend who is an ER doc told me when I started having stuff back in the spring to “never, never ever let them diagnose with with fibromyalgia/CFS- that’s what they write down when they can’t figure it out”. Your fatigue/pain/migraines etc. doesn’t sound chronic- you were symptom free and medication free for four months? Have you had any experience with numbness? What have they done as far as blood work? ANA- antinuclear antigen- or other autoimmune markers? Did they use contrast with the MRI? Did they do an MRI of your spine? Hormones have a huge effect on peripheral pain fibers. The water retention is interesting. My tongue used to swell up and once my lower eyelid swelled up when I first started experiencing severe fatigue. Peripheral nerves control the tone of blood vessels- if you loose input you loose tone and swelling can occur. Do you have the report of your blood work? How are your menstrual cycles- are they normal? (if some of this is too personal to put on the blog feel free to email it to me.)
I’ll be praying for you both- I know how disappointing it is when you’ve been feeling great and you feel yourself spiraling down back into fatigue etc. again.
OK I just realized that you were diagnosed with fibromyalgia (sp?) not Chronic Fatigue Syndrome- which is good since I was reading through the diagnosis requirements for CFS and it really didn’t sound like you. OK now I’ll read on fibromyalgia.
I would like to thank each of you who prayed for me these past several days. I have been doing excellent, with only the occasional pain (minor) for three days now. I got to go out on visitation this morning, that was a blessing and I was still well enough to go on a hayride with our Sunday School Class this evening. It was quite cold, but still a lot of fun. I do have an appt. to see my neurologist later this month. I’m taking my meds, but only one kind instead of what I was taking before which was several different kinds. A low dose and it seems to be working. We will, of course, keep you updated on my condition. Thank you for your concern and prayers.
Nichelle has had several good days in a row. This is a huge blessing, as the only outlook a week ago was a condition I can only describe as “mostly disabled,” which she experienced with little variation in severity, for the time between Naomi’s being weaned and last February.
Now it seems that my theory about treatment: That the anti-migraine medication frees Nichelle from the pain which prevents her from sleeping correctly (her sleep study showed 425 movements in a 6-hour period), and the lack of qualitative sleep produces many of the other symptoms.
This isn’t a perfect model. It doesn’t account for the swelling, for example. But the pain, swelling, exhaustion, and “brain fog,” all seem to go together, and the only medication that seems to improve all three is the migraine medication.
Unfortunately, the medication doesn’t take affect right away, and the rapidly increasing severity we witnessed, even after Nichelle began taking that particular medication again, led me to fear the worst.
Ups and Downs
For the past nearly two weeks, Nichelle has been at the top of her game, or nearly so. Yesterday evening brought significant sharp, stabbing pains and stiffness in her hands. She also experienced something we dubbed an “ice cream scoop headache,” because she said it felt exactly like someone scooping out her brain with an ice cream scoop. We believe they balance nicely with icepick headaches on the symptoms list, and everyone knows an ice cream scoop is much more fun than an icepick.
This morning was no better. We both awoke tired, like we hadn’t slept enough, which means that Nichelle (probably) was very restless. Her edema was extremely pronounced, and the icepick headaches still troubled her. She spent most of the day sleeping, and was a bit worried when she fell into sudden, deep sleeps while tending to Naomi. The past few days have been on and off. Wednesday and Thanksgiving Nichelle was fine. Friday Nichelle got up at 5:30 to go shopping (insane, in my opinion, although she claims the sunrise in the Berkshires was beautiful, I think that anything that happens that early in the morning can’t be all that great), but started experiencing headaches by mid-morning and slept much of the day. Saturday she was fine. Sunday she lasted until mid-evening, but then the pains and exhaustion returned.
Today we went to see Dr. Rescigno, her neurologist. (He was the one who started cutting back her other meds, after diagnosing the untreated migraines.) He agreed with our observation that treating the icepick headaches relieved most of the symptoms. He also didn’t find it unusual that Nichelle was able to go off her medications for several months before symptoms returned, as medications of this type tend to linger in the body. (He had been very pleased, though, that the numerous medications Nichelle had been on mostly appeared to be superfluous.)
He suggested that Nichelle continue with the nortriptylene (75 mg/day) until the icepick headaches stay away, but that it would probably be possible to reduce the dosage once that is achieved. She has a small dosage of another med if dizzy spells become a problem, but it’s a muscle relaxant and will make her drowsy. (The dizzy spells aren’t a severe symptoms right now, but this would reduce them from several minutes in length to several seconds in length.)
He did agree that cortisol might be important to the diagnosis (Sorry, Beth, we couldn’t stump him with that one), but (as we already have a working model for symptom relief) recommended we continue with the current treatment, and with the plans to see the cardiologist (who he predicted would give her a clean bill of health). He also recommended an endocrinologist in Nashua to look at the water retention/cortisol.
Tuesday morning: Back pain and edema that makes yesterday’s water retention look trivial.
Early Tuesday afternoon: The icepick headaches are almost entirely absent at this point in the day. The swelling is still severe, but Nichelle feels almost perfect.
Late Tuesday afternoon: Nausea, fatigue, pain, icepick headaches. “Not doing well,” is Nichelle’s self-description.
The past few days have been both wonderful and difficult. From Tuesday afternoon until Thursday evening, Nichelle had nausea, “brain fog,” back pain, leg pain, head pain, and significant swelling. (We had an amusing time trying to determine whether she had retrieved the mail.)
Thursday evening, she started feeling better. Then she couldn’t decide which of her projects/tasks to work on (at 11:00 p.m.). I encouraged her to ignore the work (which she felt guilty about), and go to sleep.
This morning, despite being awakened three times by the children (Naomi x 2, David x 1), she still felt better. It’s hard to believe only yesterday morning we were both reduced to tears over her deterioration.
The Lost Weekend
It is Saturday morning. Last night Nichelle was feeling better, and we stayed up late reveling in this unexpected quality time. I am about to leave for Fat Club. As usual, I am leaving at the last minute. Nichelle awakens as I am brushing my teeth, and she is in significant pain. Nichelle had wanted to do some follow-up visits to families we have met who were interested in the church, but it is obvious our plans will change.
By the time I return home, it is clear Nichelle will not be doing much today. We all pitch in to clean the house to her satisfaction. Everyone works hard, and the boys don’t even fight.
I had somehow put these pains out of my mind. It’s odd that I have forgotten. I sit on the floor next to Nichelle on the couch, and hear the sharp intake of breath and feel her body convulse as each stabbling pain hits. The pains are so strong that her voice breaks and she is brought to tears. I hold her hand, and wish there were something I could do to help her. Lolita McGrath surprises us with a large dish of spaghetti and meatballs and a caramel-apple pie. I joke that Nichelle needs to find special music to perform that involves an extremely high note every 10 to 15 seconds. Although the pains diminish somewhat for a few hours here and there, they last up until Nichelle goes to sleep.
Sunday morning brings renewed hope. AFter a couple of minor pains, Nichelle announces that she feels fine. In Sunday school, I am amazed that there is so little swelling in her face. How thin she looks!
After Sunday school, I head down to the junior church class that Nichelle and I teach on alternate weeks. Nichelle goes to sing in the choir. I know she will be later than usual, because she is also singing a duet with Lolita. Nevertheless, I am surprised when Lolita arrives at the classroom, and says she can take over for me, and that Nichelle is in the choir room and needs me.
I hurry upstairs, and find Nichelle sitting in a chair, her head leaning on one hand. I run through a bunch of questions to try to figure out the latest combination of symptoms. I check her respiration and heart rate to rule out an anxiety attack (she has been free of those ever since beginning to confront some traumatic issues a year ago). She has numbness in her feet and hands, shakiness in her arms. She explains she has the feeling that something is wrong, but can’t define what. Rather than anxiety, this seems to stem from a slightly dizzy or disoriented feeling in her head. The swelling is back; her face is vastly different than how it had been an hour before.
Church is almost over. I help her slowly down the stairs, and, when church lets out, we collect the kids and head home.
We continue eating Lolita McGrath’s spaghetti and other leftovers, and sit/lay down together as a family to watch Harry Potter and the Sorcerer’s Stone. Nichelle and I both fall asleep during the part we’d seen the day before, and Nichelle spends most of the afternoon sleeping. Despite this, she is no better off when Sunday night arrives, so I take the kids to our evening service by myself.
When we get home, we have two tasks: Help clean up the house to a reasonable standard, and get the grocery shopping taken care of. Nichelle and I work on a shopping list. Some of the “brain cloud” has returned, and she has trouble staying focused on each item as she writes it. We pray with the kids before bed, and I leave Nichelle to supervise the quick cleaning they will do, while I head out to the Super Wal*Mart. By the time I get back, it is nearly midnight. Nichelle and I load the dishwasher, and I help put groceries away and run some laundry. Nichelle thanks me for all I am doing, and we both embrace and cry on each other’s shoulders, as I respond, “It isn’t enough, though.”
Today Nichelle is quite a bit better, but is uncharacteristically discouraged. We both acknowledge that this “round” has been harder on us than before.
Onward …
Ugh! What ups and downs! Have you had an MRI with contrast or a spinal tap? From what little I’ve read I haven’t come across anything that had numbness as symptom of FM- sounds more like MS- well except the swelling. I will be praying for both of you.
I just did a quick search, and yes numbness is typical of FM- it goes along in the neuropathy bag of tingling, pain etc..
Incidentally swelling was also listed as being associated with FM.
Wow, what a day today. The pain was minimal, but my emotions were a wreck. I was quite down today after having such a yo-yo of a ride over the weekend. I pretty much spent the day in tears and managed to get to the hospital for the blood work to be done, and then do the dishes. It was quite depressing considering the work that needs to be done to get ready for Christmas. So I ask that you also pray for my emotional state as much as for the pain to be gone or at least managable, if that’s actually possible.
I had been praying throughout the day today and the tears kept coming. At around 5 p.m. or so, I got alone again with my Lord and had some more quiet time in prayer. At that moment, I was released from the load of grief and despair I had carried all day and was refreshed. Praise God and thank you to those that prayed for me, too. I was able to go to the kid’s Christmas program tonight and that was a blessing.
This Sunday night, the 11th at 6 p.m., is our Christmas Cantata, “The Gift Goes On.” My prayer and hope is that I will be well enough to take part in it.
Here’s the description from this weeks church bulletin: The Gift Goes On, written and compiled by Dove Award-winning songwriter, Sue C. Smith, and arranged and orechestarted by Dove Award-winner Russell Mauldin, the celebration of the birth of Christ is an experience that you will never forget. Centered on one of the best-loved Christmas songs of all-time, this carefully crafted musical features a host of tradional carols, an intimate moment shared with Mary and her infant Son, Jesus, and a life-changing invitation to all mankind to follow the true Christmas Star and a powerful moment of congregational sing along worship. Songs includes a blend of contemporary Christmas numbers like the title song, The Gift goes On along with traditional songs nad choruses by Handel. The presnetation expeience is enhanced with a live host and hostess and a multi-media presentation with motion pictures. Journey with us into the stable and see the shepherds as they see the Christ child for the first time. Join Mary in an intimate moment adoring her infant child and a sing along with our host and hostess in a gala carol sing along with full orchestration.
Hi Nichelle,
I’m glad you are refreshed after such a lousy weekend! I am too! I know how the “mental state” can be so affected on a different level than the physical pain. Not that this is an excuse for sour attitudes after a pain episode, but our pain sensing nerve fibers travel up the spinal cord and through the amygdala- “the emotional center of the brain” before it then goes to higher brain centers. Just like so many other things, just because our bodies are wired to behave a certain way does not excuse us for sinning, but I think it helps with the struggle of not succumbing to a pity party or having a sour attitude. Praying for relief of the pain and the mental state is so wonderful when you finally get through it, and you know that you feel good because God allowed you to.
I would like to meet you and Doug sometime soon, and I’m sure my mom would like to come and meet you too. Could we come and visit after Christmas sometime?
Your Mom invited us up for dinner “sometime after haying season is over,” but she never set a date. (:: hint, hint ::)
You are all welcome any time; it doesn’t have to be after Christmas. (Now the trick will be finding a day where both you and Nichelle are feeling well.) I have lots of time off coming between now and the end of the year, too, so we’ll all be home, for example, between Christmas Eve and the day after New Year’s Day. I’m dying to meet Clover.
It was so wonderful to see Nichelle physically and emotionally better yesterday evening. Nichelle actually said that her pains Saturday morning were as painful as the Holy Grail of Pain: labor pains. Having an anxiety disorder, I understand that there are certain emotions over which one has no control; I suspect Nichelle’s discouragement yesterday was physiological in origin, especially considering how rarely she gets discouraged about anything.
We both found your article title “My Unredeemed Body = The Crapper” very amusing, and, as always, your Biblical perspective was encouraging reading.
Over twenty-four hours of excellent health in every area! This is such a contrast to the weekend. This is encouraging. It shows us (me, especially), that not every day will be so dark.
Nichelle’s biggest prayer is that she will be well enough to sing in the cantata on Sunday. In addition to the choir numbers, she has a solo piece.
One of the things that occurred to me is that at stake (and that is eating at the back of our minds) is being able to do special music in church, something she loves. If even after a long period of perfect health, her health is still so tenuous, she may have to decline from such opportunities.
Yes, I am now confident that I will do well at childbirth after passing two kidney stones- a close runner up to the “holy grail” of pain. Now I compare the burning pain in my legs to kidney stone pain- it’s come close, but so far just one evening.
As far as visiting- it is just that I will be “down south” the last week in December so that would be best for me.
We made it through exactly seven days, nearly to the hour, of perfect health.
Now the twins are back, although not insufferably, enough to make Nichelle miserable, at least in the evening.
Top that off with a visit to the cardiologist who just didn’t seem to be listening to the symptoms … and we’re a bit frustrated again. I told Nichelle this would happen: Everyone we knew was praying she’d be well for the Christmas cantata, and now that it’s past, she just has me praying for her.
On the bright side, Nichelle’s solo and cantata performance were flawless (there’s an encore performance this Sunday night), and the boys and I are learing to keep house better than ever before.
Last week of December is fine with us. I’m on vacation, and we have nothing other than minor trips planned.
The first week of January.
It is now day 5 of a seriously debilitated span with Nichelle. The only good thing is that this time, Nichelle seems to have suffered very little from the “brain cloud” that reduces her intellect to pudding.
We now have three months of data that show that the debilitating fatigue and pain are happening are happening during menses. (I didn’t believe the conclusion until I studied my BLOG entries.) There are times of increased symtoms outside of menses, but every episode that completely wiped out Nichelle for several days has occurred while she is menstruating.
Nichelle has an OB/GYN appointment tomorrow to talk about hormones. It wasn’t the endocrinologist referral we were hoping for, but it’s all our PCP will go for at the moment. The cardiology appointment was, as we expected, a complete waste of time, except for ruling out a few unlikely possibilities.
(Thanks to Dr. Beth for describing a hormonal process that may account for the pain, and may even explain the swelling.)
Gotta run. We’ll keep you posted.
It is wonderful when you have an appointment with a doctor who actually listens—and most importantly, believes—you.
I spent nearly an hour with my GYN this morning, filled her in on all that’s been happening, and I’ve been put on the NuvaRing (www.nuvaring.com), which will stop menses. How cool is that? I’m thrilled, and obviously hope it’ll work.
However, I have another doctor stumped by the swelling. (Only our neuroendocrinologist friend Dr. Beth seems to come up with models of what may be causing it.) I’ve contacted my PCP and will update him, and see if he will now refer me to an endocrinologist.
We’ll keep you updated. Thank you for praying.
I’m feeling great today. I’ve been getting a pin-like stabbing pain in my lower abdomen, but it’s not knife-like.
It gives some idea of what the past 5 days or so have been like, as Nichelle is relieved that she’s only experiencing a pin-like stabbing pain.
Unfortunately, it didn’t last. The significant pain and burning sensations returned within a few hours.
I have to say, tonight we went out to a get together at a fellow church member’s house. I am amazed at the level of pain Nichelle is able to endure without letting it stop her. She rated this evening as a “7” on a zero to 10 scale, 10 being unmedicated labor pain. Women are tougher than men, even if men don’t want to admit it.
Day 9.
Nichelle had five whole minutes of feeling good today. Then she tried to get out of bed.
We took turns being discouraged over the weekend. I got to go first. One good thing is that the “brain cloud” is absent (or was until today), so we’ve been able to talk to each other.
Even this seems to be disappearing as the symptoms go from bad to worse. Friday’s “7” on the zero-to-10 pain scale has become an 8 or a 9. (10 is the level pain experienced with unmedicated childbirth—which is how Nichelle delivered Naomi.)
We’re trying other things at the suggestion of our neurologist and other doctors: Looking for a dietary connection. Giving therapeutic massage a whirl (massage and accupuncture have helped some of the neurologist’s patients). Making sure Nichelle gets enough potassium and magnesium.
Day 10. Some improvement at last. Nichelle has been given two new pain medications from another doctor at our “good neurologist’s” office.
She was able to drive today, and run some errands. The pain has subsided. Nichelle tried her new pain medications, but overall the pain was much less today, and is now completely gone.
Even better, after prayer of mine for strength and an outpouring of my heart to God, I’m not feeling rotten today, and neither is Nichelle. It was awful. We were snapping at each other (which is very unlike us), getting angry with the kids for minor things, and really worn out.
I was at a point on the weekend where even God’s sovereignty didn’t comfort me at all.
What a roller coaster.
I’m glad you have some new pain meds to try out. I have a perscription for Neurotin, which I can get if I have the pain as I did back in November. There are lots pain meds out there that are specific to neuropathic pain and are not narcotics. Glad you are feeling well!
Yesterday was excellent. I got to go out for the first time in days and drive. I ran a few errands, did some cleaning up (much still to be done), got the kids from school, took the kids to see John’s second basketball game. I was impressed to see his enthusiasm and his speed, whoa! Their team did lose, but they put in a really great effort. He has another game on Thursday and Friday. We got home and everyone was playful including me–which in itself is amazing. Haven’t been well enough in nearly a month to be playful. I actually got in a bit of wrestling with John, which is always great fun. The rest of the evening went mostly well, with an onset of of the burning stabbing back pain. I took one of my new meds and was feeling mostly decent again not to long after. This morning I awoke and felt NO PAIN, got the kids up, played with them for a bit, got breakfast made in between watching Doug workout (eagerly awaiting my return to tae-bo), made lunches and Doug chimed in you have 10 minutes before you have to leave. “Leave, leave where?” was my thought and he informed me that I was taking the kids to school. Oops, forgot about that. I got myself ready and out the door and the kids had time to spare when they got to school. Still feeling well, been having they occasional weird scooping (instead of the stabbing) head pain. It’s not severe and that’s good, too.
At Christmas, Doug bought Naomi two new geek shirts. She loves them. Yesterday, I was putting her laundry away and she spotted her V2.0 shirt and picked it up and hugged it. She was already dressed so I told her she could wear it to bed. She quickly took it and put it under her pillow and remembered to get it when it was bedtime. She also, informed us after dinner time that she went potty. She did all by herself. We were amazed. She’s been needing our help and that was the first time she did it on her own. She just turned 2 in October–we were very excited and impressed.
David had his 7th birthday on Monday. We’ll be having his joint party with his best friend born on the 7th named David, too. That will take place on Jan. 21. We did give him one of his presents and was looking for more, but he was told he had to wait until his party. Doug went out and braved another grocery shopping trip (he did great) and picked up a personal birthday cake for David. We allowed him to have it on Tuesday morning, a piece of it that is, for part of his breakfast. He thought that was really cool.
It’s great to be doing well again. Hope I’ll be able to go to church, too. I’ve missed not going. Notes are great, but not being their amongst fellow believers for so long is becoming harder. This bout of fibro has been very difficult, not only physically, but also emotionally. There are other factors at play, too, and perhaps, someday soon, I’ll be able to share that, much prayer is needed before I do. God is great!! His love and care and the strength and grace He gives leaves me in awe.
Ah, I forgot to mention that I have an appt. today for massage therapy/chiropratic work-up too. This Doctor, is quite familiar with fibro and had many questions for me over the phone. Yikes, it’s in a hour…oops. I’ll let you know how things go.
Ugh. Nichelle is down to 10 minutes of upright activity followed by severe pain for several hours; the new pain medications seems to be have been significantly effective only for a day or two. I can’t remember what day this pattern started. It must have been Thursday, because she was able to go to church on Wednesday night.
hey grandma. i hope u feel better. i’m glad that u were able to get up and start doing things again. i know how hard it was for you when you were at new england with your medical condition but i also know that you would want to be up and about doing things. i hope u start to get better and the doctors are able to find out what exactly is the problem so they can treat the problem. i’ll be praying for you and the family and don’t ever forget that God is always in control.
Hi Kherna,
It was great seeing your name under the recent comments section! Thanks you for your prayers, but I’m not too sure about the Grandma bit though … 😛
A good day at last! It’s been a long couple of weeks.
Nichelle felt great today. She did the impossible–cleaning (with the help of Isaac and David) the central room in the basement and Isaac and David’s room.
I’m so thankful to have her “back with us.”
Hey, I’m glad to be back. I’ve been away for too long. Needed a rest after the cleaning, my back was “yelling at me”. Feelin’ fine now though. Please keep the prayers coming, physically, but also emotionally. Many thanks.
Well, the good day didn’t last much more than one day. I think Nichelle was at full capacity for about one and one-half days.
The pain has been very severe, with a few “Holy Grails of Pain” episodes (in which the pain is as bad as unmedicated childbirth). The swelling seems to be getting worse as well, with fluid retention accounting for a significant increase in weight.
I can tell when Nichelle is having a really difficult day, because she won’t be at the computer at all. Sadly, since late December, that’s been the case more days than not.
On the bright side, Nichelle and I had a good laugh about all of the symptoms last night.
I’m praying Nichelle will be well enough to attend the Winter Thaw on Saturday, which is what the company for which I work does in lieu of a Christmas party. This year it will be held at the Museum of Science in Boston.
Nichelle and I have been very frustrated of late with the inability to get a diagnosis for the swelling and treatment of it or the fibromyalgia, although eliminating most of the migraines was indeed beneficial—this year, although the pain is much worse—Nichelle hasn’t lost her cognitive power for the most part.
The following quote from our friend Beth (who holds a doctorate herself) helped put things in perspective:
i just got finished writing a whole like two paragraphs and now it got erased whatch this one get erased to.
maybe not
but i hope you feel better granamay and grandpapaamay. dont know if you can read that but hope you do
Thank you, Tatiana. Glad to hear from you. Write again, soon. Hope you and your family are doing well. Please say hi for me.
On the bright side:
We did go to the Winter Thaw, and had a wonderful time. The food was good, the venue was fun, although one can’t see much of the Museum of Science in just a couple of hours. If I ever get caught up on my BLOG backlog, I’ll write more about it.
Nichelle made it to Sunday morning, Sunday evening, and Wednesday night church services this week, although Sunday evening and Wednesday night I was tempted to take her home.
On the not-so-bright side:
It was a painful reminder of just how quickly Nichelle can go from “feelin’ fine” to barely able to walk. In three hours, over half of that spent sitting down, Nichelle reported “my body is shutting down.” We wrapped up with a viewing of the OmniMax film, Operation Red Flag, and Nichelle could barely walk when we were done.
We were hoping to get Nichelle in to see an endocrinologist soon. Unfortunately, the one to whom she was referred refused to see her, because her file didn’t show anything in it that was endocrinology-related. I think this might have been because the edema has had only a minor place in relation to the other symptoms, so there isn’t much about it in the records. Also, if the swelling is due to excessive cortisol, none of the lab work she’s had done is designed to detect it.
Lest you think we’re drinking Drain-O, here’s what our friendly volunteer patient advocate explained:
Nichelle reports a 10-15 pound weight gain due to water retention over the past week or so. It’s getting bad enough so that—unobservant as I am—even I can see it’s getting worse. Most of Nichelle’s “big” clothes won’t fit either.
The pain is pretty bad, and Nichelle’s activity level has usually been 10–15 minutes “up and about” with 2-4 hours to recharge. She’s been able to pick the kids up from school most days, though. Today she was able to do a little more than usual in the morning.
And there are signs that the “brain cloud” (drop in cognitive ability) is returning. It’s definitely present at times, albeit not for long periods.
Nichelle finally got an endocrinology appointment, with a different endocrinologist than the one who refused to see her. It’s not until March 6.
Meanwhile, life is swell—meaning the swelling is getting much worse. Nichelle has tracked a 5-lb. weight gain over the past 2 days, and 20–25 lbs. over the past 2–3 weeks. This is starting to look more like Cushing’s Syndrome, right down to the stretch marks, which is one of the possibilities our friend Beth has suggested. (I’ve told Beth I’d buy her a Moxie if she’s right either about Cushing’s or hypercortisolism.) I was hoping for the buffalo hump (to aid in diagnosis), but Nichelle doesn’t find that very appealing.
Sunday night I went forward in church to recommit myself to God’s sovereignty, and beg Him for a supernatural end to the discouragement I was constantly being buried in. (We had a guest speaker, Norman Frink, who gave a needful message on suffering.)
I’ve been much better the past few days, and can’t explain it other than God’s grace, especially as there’s been little to hope for in Nichelle’s worsening condition.
A Spanish proverb I just learned:
“Dios apreta, pero no mata.” (God challenges—lit. tightens—but doesn’t kill.)
This is roughly equivalent to our “That which doesn’t kill us makes us stronger.”
One Spanish idiom I’ve always loved is, “Se le pegaron las sabanas,” which means, “The sheets stick to him,” used to describe someone who has trouble getting up in the morning. (Thanks to Ricardo Castillo and his mamá for verifying the precise phrasing on this.)
Follow this link for some more Spanish proverbs.
After my appointment with the neurologist on Monday, I was put on a diuretic again (something stronger than I was on before). So far, there hasn’t been much effect—practically no effect—and that was with an increase in dosage, but this is only day two.
For my appt. I brought in pictures of myself at Christmas (when the swelling was bad) and then just 9 days later (when the edema was extreme) to give the doctor the actual effect of how severe the swelling gets. I also had taken several other pictures just days before the appointment at different times of the day. He was astonished at how bad the swelling is. It’s quite awful dragging around this extra weight and I do hope and pray something is done about it soon.
Yesterday, I was able to do more things for longer periods of time without having to stop and rest up. I went like that up until 10 p.m. when the severe pain set in again (although I noticed quite a bit of pain setting in at suppertime). Thankfully, today, I haven’t had severe pain, just mild pain, and am doing better now.
It’s just a few hours before church starts, and I’m hoping I get to go tonight. I really can’t remember the last time I was in church. But first, I really need a nap.
We’ve been blessed by our friends and all of their help: calling, picking up the kids from school, visiting, and making meals for us.
Pain
Beyond the significant swelling, Nichelle’s life seems to be defined ever more by pain. On Valentine’s Day she had a “good day”—the pain was only mild for much of the daylight hours, and she enjoyed being able to do some work around the house. By suppertime, though, her pain had started to return. Walking became markedly difficult. By 9:00 or 10:00 the pain was steady and even more severe.
Tonight was particularly troubling. Nichelle was feeling pretty good until late afternoon, and was looking forward to attending the midweek Bible study. At 5:30, she announced that she needed to get dinner on and then take a nap. By the time I left work, she determined that she wasn’t going anywhere. By the time I got home to pick up the kids for church, she was having severe pain in her left leg, and remained virtually immobile during the two hours we were out at church.
About the time the kids were being put to bed, the pain became extreme. She took two of the pain medications she has been prescribed, but normally does not use. They didn’t do much. The pain in one leg spread to the other.
Then the head pains started. These were awful.
For ten minutes at a time, over the space of more than half an hour, Nichelle is racked with sharp head pains that almost defy description. Every few seconds she convulses, stiffly curling up, and manages somehow to stifle her cries of agony. Tears well up in her eyes. Her breathing becomes rapid. For a few minutes these pains subside, and then they return.
I kneel beside her, gently clutching her hand, my own body heaving with sobs I cannot control. “I love you,” she whispers quietly when the pains relent for a few moments. I weep even more.
After what the clock says is only an hour, the stabbing pains have passed. Nichelle sits up for the first time all evening.
Perhaps the rest of the night will bring some degree of comfort.